The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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I'm going to a MUPS focus group

Discussion in 'Advocacy Projects' started by ScottTriGuy, Aug 21, 2017.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I passed the telephone screening process and next week will be attending a small focus group by the Medical Psychiatric Alliance with perhaps 5 - 8 people and 2 facilitators and I am preparing to question their MUPS construct.

    I am looking for papers or publications that dismantle MUPS and key questions that expose their bias. I'm also thinking of making a summary page to give to the other participants, maybe some FAQs, key quotes - basically re-frame the focus group narrative to question the Psychiatric Alliance's psycho construct and not our own physical symptoms.

    So any anti-MUPS info that could be helpful, please send my way.

    Here is the ad that lured poor unwitting me into the focus group:

    Do you have experience with undiagnosed symptoms?


    What IS THE OPPORTUNITY?


    This is an opportunity to share your experiences about living with unexplained or undiagnosed symptoms to help create a new project to improve the Primary Care experience. Our goal is to build a series of activities to advance relationships and communication between people living with unexplained symptoms and their primary care providers.


    What ARE THE EXPECTATIONS?


    Have you had ongoing or long-term symptoms that are unexplained, and that impact your quality of life? We would like to know about any opportunities or challenges you may have experienced in the relationship with your health care provider(s) as it relates to these symptoms.


    Who is YOUR ORGANIZATION?


    We are Trillium Health Partners, a Community Hospital in Mississauga, Ontario. Our project is supported by the Medical Psychiatry Alliance, a collaborative health partnership dedicated to transforming health services for patients living with both physical and mental illnesses and/or undiagnosed or unexplained symptoms.

     
  2. RogerBlack

    RogerBlack Senior Member

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    MEMum, ScottTriGuy and Kati like this.
  3. adreno

    adreno PR activist

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    An admirable effort, but I think you will find that facts and rational argument does not persuade people who hold beliefs according to the BPS model. It's like arguing against religion.
     
  4. RogerBlack

    RogerBlack Senior Member

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    One has to try.
    Waiting 50 years for all of the BPS proponents to die is an alternative of course.
     
  5. Esther12

    Esther12 Senior Member

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    Hard to convince people that their careers are worthless mistakes... but it might work!

    In a discussion about this, I would avid debates about causation, and focus instead on how easily supposedly caring interventions can make life worse. Good luck. Hope it's interesting.
     
  6. adreno

    adreno PR activist

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    The BPS school will not "die" by itself. But exposing the BPS brigade and their belief system to the public, as well as educating the young generation of medical professionals before they join the cult, will likely be more productive than arguing with proponents directly.
     
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  7. Kati

    Kati Patient in training

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    I would suggest to focus on what the science uncovered about some diseases that may fall under the MUPS umbrella and ask how much funding has been spent in finding cause and treatments.

    Then remind them that diseases such as epilepsy, Parkinson's disease, MS and stomach ulcers were once labelled as MUPS.

    Branding full disease as MUPS is of huge disservice to patients and their families. It robs them of the human right of competent medical care for their disease. And yes, in Canada, health care is a human right.

    Refusal to attend international ME conferences (or any other disease deemed MUPS) refusal to take a look at the science, refusal to offer patient testing and access to drugs that have shown helpful and hopeful from preliminary trials just show how hard they are trying to contain all patients who have been sidelined by their illness into one umbrella and label them indefinitely as MUPS, is plain and simply unacceptable and unethical.
     
    Last edited: Aug 23, 2017
    concepcion, Jennifer J, Jan and 13 others like this.
  8. Woolie

    Woolie Senior Member

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    This is a tricky one, @ScottTriGuy. Its hard to know whether they will actually listen to you or just selectively listen to the bits that fit their model. The name of the supporting organisation and its stated purpose would tend to suggest they're not open to alternative explanations. All you might end up proving is that doctors need to get better at hiding what they really think of MUS patients.

    Also, going all factual and rational could backfire, make you look overly desperate to deny a psychological cause for your symptoms.

    Maybe the best strategy would be to use your perspective as a patient to argue against the worst excesses of MUS treatment. You know, stress the need for practical help and support. Discuss the suffering inflicted when doctors make unjustified (psychological) assumptions about the causes of a patient's symptoms - or worse still, try to 'reeducate' the patient or 'correct' their behaviour. Emphasise that practitioners need to keep an open mind, and not assume that unexplained necessarily implies psychological. Talk about how when assumptions are made, that's when the doctor ceases to really listen and the therapeutic alliance is broken.

    Stress how lying doesn't work. The doctor shouldn't just try to pretend he's making no assumptions (while secretly making them), he must actually NOT make them. That we can always tell if the doctor is hedging, etc.

    So you want neutral, practical, non judgemental support. Help dealing with symptoms, etc.

    If you have any negative experiences of CBT or GET that would be good to mention.

    I guess you want to try and say something powerful, personal, and above all quotable. Something that might make it into the report.

    Here is a good personal account from a person with neuro MUS which describes the harms very eloquently. This one is especially good, because the person later turned out to have Sneddon's syndrome. So you can't dismiss her complaints as part of the patient's psychopathology:

    http://www.madinamerica.com/2015/04/turning-patients-numbers/
     
  9. A.B.

    A.B. Senior Member

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    Just say that the concept of MUS is a tool to reduce the healthcare costs associated with poorly understood health conditions by reframing them as psychologial problem for which the patient is personally responsible.

    Then list some former psychosomatic illnesses to drive the point home, pointing out that certainly there can never have been any good evidence that these were psychological in origin. Go on saying that today's evidence behind MUS is just as unreliable as the evidence for psychological origin of these former psychosomatic illnesses. Then say that nobody should accept a MUS diagnosis without solid evidence of psychological causation. Be prepared for the inevitable appeal to authority, to which you respond again by saying that many authorities also believed these former psychosomatic illnesses to be psychosomatic, and that clearly these claims must be judged on the grounds of evidence.

    If you're really motivated you could prepare to debate the evidence concerning one illness considered MUS, for example psychogenic seizures, CFS, or IBS. Pick one where there is evidence for a role of biology and the MUS ideas are easily ridiculed (you can't really disprove them because the claim is based on vague invisible forces outside the realm of objective science, just like you can't disprove the existence of God).
     
    Last edited: Aug 22, 2017
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not sure how much you can achieve other than gathering information (maybe with a voice recorder) on how crazy this all is.

    There isn't really any anti-MUPS info that I am aware of. It is simpler than that; MUPS as a diagnosis is self-contradictory.

    A diagnosis is some form of explanation - either in terms of cause or if a syndrome as the explanation that 'your condition can reasonably be considered to have the same cause as that of a group of other people'. In other words you have these symptoms because of some process other people have that we have identified in this way.

    So a diagnosis is an explanation. It isn't anything else as far as I can see - it has to be an explanation.

    So how can you have the diagnosis 'medically unexplained symptoms'?

    Either it is an explanation of cause, which would mean the symptoms were not unexplained.
    Or it is a syndrome and the cause is assumed to be the same as others - but since MUS covers all sorts of different symptoms that makes no sense.

    I would ask these people politely exactly what it is they think they are explaining with this unexplaining term?
    Or I might ask why people whose symptoms are unexplained should be asked along to meet when people whose symptoms are explained are not.
    If what they mean is not unexplained but explained by being caused by the brain then they should just say that and explain why they think that.
     
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  11. A.B.

    A.B. Senior Member

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    A diagnosis is also a way of saying that certain treatments should be tried.

    Applying MUS all sorts of different symptoms means that all sorts of different symptoms will be treated the same way. With CBT, and probably soon internet CBT because that's even cheaper.

    It all makes perfect sense, from a neoliberal austerity policy perspective. Behaviour that would normally be described as discrimination and negligence suddenly becomes "improving access to psychological therapies for people with mental health conditions" (which, everyone knows, are so stigmatized and neglected).
     
  12. Kati

    Kati Patient in training

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    I once attended a "How to live with a chronic illness" program in my community. There was a woman there who lived with seemingly fibromyalgia, who disclosed she had been diagnosed with somatization. The clinician was trying to explain to her that the pain she was feeling was kind of real but it was her mind playing tricks. Something like that.

    This might have been 6 years ago. These days, they simply put you in the MUPS category. Not as upsetting for the patient but meaning the same.

    There is over 1 million Canadians living with ME, fibromyalgia, or both. Seemingly the government does not want to have to pay for expensive health care for us all. And them Canadian women are so polite. They never protest.
     
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  13. A.B.

    A.B. Senior Member

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    We have to protest more. Act up. The psychologization can also be seen as attempt to shame patients into silence so that they don't speak up about not receiving adequate care.
     
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  14. Kati

    Kati Patient in training

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    Hard to protest when noise, cognitive work, being upright, and talking makes you sick. But then I agree with you.
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The word 'partnership' interests me here. I translate that as 'money-making business pretending to be friendly'.

    In my old department some of my colleagues tried hard to employ psychologists for chronic pain management from as far back as 1990. The trouble was the psychologists were all young women who sooner or later got pissed off because they could see that nobody actually knew what they were doing and they were supposed to clear up the mess. By the time I had retired my colleagues had given up. Nobody was going to be stupid enough to take on a job as a psychologist in a rheumatology unit on poor pay pretending to know what they were doing and getting nowhere.

    So I guess over the last ten years the strategy has been to outsource 'soft psychology' to companies that pay a living wage and fire anyone who does not read from the script. The difference here seems to me to be that there is no longer any need to be kind to these people. They get paid and they know even less what they are doing. A blue cardigan is not a Helm of Hades that makes the person's soul invisible and untouchable.

    I cannot see this lasting to be honest, because fairly soon it is going to become clear that the whole thing is a scam. It is easier for that to come out if it is commercial. It was hard to rant at NHS staff who were trying their best to help. So I think the whole PACE-based empire is an exercise in self-destruction in the longer term. Maybe at the moment we have got to the peak of this 'partnership' desquilinium (BS). Partnerships in hospital building peaked in the UK in the 1990s and I think have now faded because the debt-collectors have come back to haunt the government.

    I would be interested if STG could get some nice quotes from these people. Whatever they say may be taken down in evidence and used against them as they say.
     
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  16. Valentijn

    Valentijn Senior Member

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    I think @ScottTriGuy is right to want to challenge them, but I think @Jonathan Edwards is right that the meeting itself isn't the place to do it. If you start asking hard questions, they'll start giving careful answers. Instead, it might be a better idea to tease out as much useful material as you can, record it, and eviscerate the fuckers online afterward :)
     
  17. daisybell

    daisybell Senior Member

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    @Valentijn - you just made me actually snort with laughter!
    I don't know why you can't just say what you mean.....:rofl:
     
  18. A.B.

    A.B. Senior Member

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    Whatever you do, please record the event.
     
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  19. trishrhymes

    trishrhymes Senior Member

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    Recording may not be possible / legal if the event is mainly about enabling patients to share their stories. It would be an invasion of their privacy to record these without permission. On the other hand if it is about 'telling the patients stuff', some sort of note taking or recording could be useful.
     
  20. Valentijn

    Valentijn Senior Member

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    According to the intenets, recording a conversation is legal in Canada if you're an intended recipient of the conversation. So you can record people you're talking to.
     

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